Lived experiences and insights of Chinese patients with symptomatic osteoporosis on a patient-reported outcome (PRO) programme: a qualitative phenomenological study in Southwest China

中国症状性骨质疏松症患者参与患者报告结局(PRO)项目的生活体验和见解:一项在西南地区开展的定性现象学研究

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Abstract

OBJECTIVES: To explore the lived experiences of patients with symptomatic osteoporosis on a patient-reported outcomes (PROs) programme for symptom management and quality of life (QoL) improvement. DESIGN: This is a qualitative phenomenological study. SETTING: PARTICIPANTS: 14 active participants in the PROs programme were recruited and interviewed through semi-structured face-to-face interviews. Colaizzi's seven-step method was employed for thematic analysis. RESULTS: Four overarching themes and two sub-themes emerged, including (1) varied perceptions of the PROs programme, where some participants found it beneficial for tracking symptoms while others cited challenges such as technological barriers and lack of actionable outcomes; (2) PROs as a tool for enhancing communication and facilitating appointments by enabling more efficient doctor-patient interactions and quicker scheduling; (3) emotional support provided by regular doctor-patient communication, with sub-themes of fostering a sense of belonging and offering psychological comfort; and (4) limitations of remote communication, highlighting challenges in addressing complex medical needs and providing immediate solutions for medication adjustments. CONCLUSIONS: PROs programmes facilitate symptom tracking, enhance communication and provide emotional support for patients with osteoporosis. However, limitations such as technological barriers and reliance on remote communication must be addressed. Ethical considerations, including potential over-reporting of symptoms to expedite care, require careful management. Future research should include patients who discontinue participating in the PROs programme prematurely and the perspectives of healthcare providers to provide a more balanced, comprehensive understanding.

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